Cancer Research UK main site
  • Replies 4 replies
  • Views 450 views
  • Users 0 members are here

Cold cap and chemo advice

Julie22
Offline

Morning All

I had persistent pain in my left boob for a while but no lump. Was checked at my GP's and sent away all fine. I couldn't settle so requested a private referral and used my private medical insurance to be seen in a triple test clinic. 
 

I was examined (all clear) & then offered mammogram and ultrasound. Which found a mass so they also did a biopsy, but Lymphnodes looked clear on biopsy.

The biopsy results came back as grade 3 invasive breast cancer hormone receptor positive and roughly 14mm in size.

I have had a therapeutic mammoplasty (couldn't recommend enough as I had big boobs).  A sample was sent off for the oncotype dx test.

Ive not had all my results but the oncotype test score was 26 and due to my age of 39, chemo is now recommended.  I'm not going to lie I was hoping to avoid it at all costs but it seems it's the best preventative measure to reduce the recurrence rate.

I have two young children and the thought of losing my hair, as vain as it seems, it's the thing that is bothering me the most. I'm adamant I want to try scalp cooling/cold cap and wondered what experiences anyone else has had or anyone in a similar position to me and any chemo help would be greatly appreciated xx

  • Offline

    Hi there, I had triple negative cancer last August so I had my chemo first and then my operation. I had 3x3 weekly and then 9x weekly chemo so 12 in total and did the cold cap through it all. I had long hair past my shoulder and I am so glad I did the cold cap. I lost a significant amount of hair about 80% but I persevered with it. I lost most of my crown so I put a paper surgeons hat on before they did the cold cap each time to prevent the cold going on the bald area. I found my hair started growing back towards the end of my weekly treatments. I am now 8 months on from my last chemo and delighted that on Wednesday I got weft extensions fitted and I have really long hair again which makes me feel wonderful after a year of hair loss. I would make sure that they fit it correctly as I think my cap was too small for the first few sessions so make sure it's pushed down really tight into the crown and make sure yourself you touch around when it's on to know it's far enough forward and straight as best will in the world the nurses are busy and I sometimes saw fittings that were possibly not the best and trying to retain hair if that's what you are trying to do is very important. I found the experience ok I know it added hours into each chemo session but retaining some hair was important to me, so I did it as I wanted to try and control something through the whole process. Wishing you the best of luck with it all, take care x 

  • Offline in reply to northernone

    Hi [@northernone]‍ 

     

    This is really great to read. Thank you for sharing. I'm paranoid about cap fitting well. It seemed to be ok. No gaps etc but with nothing to compare to I had no idea really. My hair is still attached all over but I'm only Day 9! 
     

    I love you've had extensions! This is my plan should the cap not work. I know I'll have to wait a while but as soon as I can I'll be doing the same. I love my long hair and will want it back ASAP. 
     

    Love Sarah xxx 

  • Offline in reply to SlightlyBewildered

    The loss for me started about 3 or 4 weeks in and was for the whole of the chemo treatment. It's daunting losing it and finding it everywhere around the house and all over your clothes. Everyone's hair loss is different and I know the cap doesn't work for everyone so this is just my experience. I was just so gentle only washing once a week with baby shampoo and using a very soft brush to gently brush what was there. It's important to brush it as any that comes out gets tangled up in the hair that doesn't come out so it needs to be brushed out to prevent tangles. I always held my hair in my hand and brushed it to prevent me pulling on the roots as every hair mattered. I used a silk pillow case to help it whilst I slept and also used it when sitting on the couch so that my head was always resting on silk. I now have lovely heathy slightly curly dark brown hair growing that's a few inches long on the top and as I said I've added a weft so I now look like I haven't had cancer which is a big step forward for me In how I feel. This was because I managed with the cold cap to retain some of the length on the back and sides but lost all the top and underneath at the nape. Some people lose hardly any hair on cold cap my loss was a lot and I think the nurses expected me to quit due to how much  loss there was for me but I didn't and I think it's helped for the new hair to grow faster also. The other reason I'm glad I tried is that it's usually the 3 weekly drugs which causes the biggest loss I think and they only last a matter of weeks and I would have been annoyed to have not tried it and only be bald for what is a couple months before the new shoots of hair started to grow. Hope this helps, take care x 

  • Offline in reply to northernone

    [@northernone]‍ 

    OMG! It helps so much :)))

    I am using a silk pillowcase too! I am gently brushing my hair. And just wearing back in a lose plait at the mo. It's pretty greasy but no-one is seeing it :) 

    So useful what you've said about persevering too, after it begins to go! That is great advice! 
     

    I'm having 4 rounds in total so we shall see. 
     

    Sarah xx

Speak to a nurse

Quick links

Follow us

Registered with Fundraising Regulator (logo)
Cancer Research UK is a registered charity in England and Wales (1089464), Scotland (SC041666), the Isle of Man (1103) and Jersey (247). A company limited by guarantee. Registered company in England and Wales (4325234) and the Isle of Man (5713F). Registered address: 2 Redman Place, London, E20 1JQ.